Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.About 33,000 Americans are currently disabled as a result of this rare neurological disorder.Not one person with TM will ever know their prognosis.I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. Yeah...life sucks, but I still rock.

4.26.2010

Join My Team Dammit! And/OR Support (i.e., $$$) A Cure...so I can stop bombarding you!!!

To my dearest Neuro Detour family,

I recently decided to participate in the Walk MS Event - even tho I'm having my worst RSD falre up ever - and I'm inviting you to join my team, Mel's Neuro Detour.

WHY I WALK...

I have MS. I have cousins with MS. I have friends with MS. I am part of a much larger community of people with MS and their care takers or support systems.

I don't even know...

if I'll have the strength to walk on May 2

if pain will require me to be in a wheel chair to complete the walk on May 2

if I will not be hosiptalized on May 2 for a relapse, flare up, or other complication

I believe in the forthcoming cure. And I want it to happen in my lifetime. Living with MS and other neurological disorders f***ing sucks.

There. I said it as plain and true as can be.

MS is one of several neuro disorders that have stolen my identity, my independence, my dance, my mind, my life as I knew it and invisioned it.

But, I'm going to walk or roll on May 2, even though I can't predict what condition my body will be in that day. Why? Because, as my brother gave me this mantra, "my life sucks, but I rock," and I'd like to erase that first phrase from my mantra.

I hate asking for help, but I'm asking you now. PLEASE HELP give me and every other MS patient their life back by joining or donating to my team today. Help me have hope.

BY CANE OR BY WHEELCHAIR, LET'S WALK AND ROLL...

I'll be at the Philadelphia Art Museum on Sunday, May 2. And I want you to be there with me, either in person or in spirit (but the only way your spirit is allowed entrance is if you donate goshdarnit).

JOIN MY TEAM DAMMIT!

By joining my team, you'll be signing up not just for a day of fun (sounds corny doesn't it? That's because this is MS Society copy :) ), but also for a celebration of the great things we can achieve when working together for a common cause, a cause that unfortunately affects me directly. Each step we take brings us one step closer to a cure - and closer to a world free of MS, one of several neurological disorders that have completely altered my life.

And if we get an MS cure, we'll likely have a Transverse Myelitis(TM) cure too - except the FDA will hold back on that life-wroth-living-giving gift for years probably, while insurance companies reject TM-Only-Neuro-Diseases because it's "experimental", and the medical company that gets the patent first makes millions off of desperate TMers who are willing to pay our of their pocket for a cure they deserve and earned.

To get things started, I've donated $75.32: 75 for the year I was born, and 32 for the age I was when my neuro detour began. That's a lot of money for me, as I'm on a fixed income, but it demonstrates how meaningful this cause is to me.

(why) YOU SHOULD SPONSOR ME

Because...

I walk with a cane.

I've had to use a wheelchair and a walker.

I want to be cane-free, pain-free, hospital-free, AND it would be nice to have people stare at my face instead of my boobs...I mean cane (but really I think 1/2 of the 21lbs of RSD swelling went to the boobage arena).

I want to stop sleeping my life away.

I don't ever want to be a burden to my friends, family, or society.

I feel like a burden.

I hate asking for help.

I'm often too weak to open the doors to my apartment building, or too spastic to perform daily activities like dressing myself.

I'm an awesome fundraiser, and we're almost in the Top 10 fundraising teams.

Because...

I'm judged by strangers when I speak funny, or my body spontaneously spasms, or my hands shake uncontrollably, or I can't find the word I need to complete my thought, because I lose my thoughts mid-thought, because they see a burden and not an independent woman, because I deserve a better life than the one I have.

AND, because I'm awesome! :)

But I could be so much more awesome if the MS Society and MS researchers have the funds to find the cure, or at least make our lives a little less painful, a little more enjoyable.

The National Multiple Sclerosis Society will use funds collected from Walk MS to not only support research for a cure tomorrow, but also to provide programs which address the needs of people like me living with MS today.

Because we choose to walk for those who sometimes can't, because we choose to donate to the MS Walk, we are getting closer to the hour when no one will have to hear the words, "You have MS...[insert phrase ending:]

a) you're not marriage material, I'll just stand [insert name] up"

b) oooh, is she contagious?"

c) is that girl/boy with the cane drunk?"

d) how could our mother leave my daughter with you...in harm's way?"

With extreme gratitude and a bit of hope, AND slight embarassment for the bits of copy included in this post that were written by some cheesy senior copywriter from some ladidah ad agency for the National MS Society,

Melanie Miller, AKA Neuro Soup Glamour Gimp

PS If you would like more information about the National Multiple Sclerosis Society, how proceeds from Walk MS are used, or the other ways you can get involved in the fight against MS, please visit nationalmssociety.org

PPS As of last week I raised more than double my original goal, so I tripled it. AND, we surpassed our team goal of $2008 (the year of my neuro detour entry), so I raised that goal too. So don't leave me hangin' and make me look a fool[sic re: phrasing].

PPPS If you need to be guilted into joining, supporting, making a difference watch the following:

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If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (http://www.facebook.com/inbox/?ref=mb#/group.php?gid=44446668472), a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.

In Pictures

Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.

To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."

Want to know more?

The following are (incomplete) lists of resources, news, and groups that relate mostly to Transverse Myelitis, but also other neurological, autoimmune, and rare diseases, as well as spinal chord injuries, and people with disabilities.